I've seen so many posts about tests, ttg's, iga's, etc, and now I'm confused. This is the only celiac type of blood test my gastro doc ordered. So which one, of the many tests mentioned, is this? Also the test was negative:

my number 2.5 range <10 U/mL

I had an endoscopy too. I think he only did three biopsies. I asked for his notes and I only see a duodenal biopsy (mild intraepithelial lymphocytosis), gastric biopsy, and mid-esophageal biopsy. My b12 was low, my iron in the "reduced iron stores" zone, my TSH in the normal range. He didn't test for any other deficiencies. I'm also on PPI's (proton pump inhibitors for severe heartburn) which can lower b12, iron, folate and calcium.

The GI decided with a negative blood test and only mild villous atrophy that my Celiac diagnoses was indeterminate. He told me to go gluten free and come back in 4 months. If I felt better he'd say I have Celiac. The only thing is I really don't feel better yet. I just gave up dairy a couple of weeks ago and am avoiding soy too.

I have to see him next week. He keeps insisting on a colonoscopy. I had one 8 years ago that showed nothing. It was a horrible experience and I don't want to go through with it again. So what do I tell him? It's not like I can ask for more tests, I've been gluten free for 3.5 months now.

Oh yeah, I also had another autoimmune disease as a teenager, chronic ITP which ended in a splenectomy. Thanks for reading the novel.

I've seen so many posts about tests, ttg's, iga's, etc, and now I'm confused. This is the only celiac type of blood test my gastro doc ordered. So which one, of the many tests mentioned, is this? Also the test was negative:

my number 2.5 range <10 U/mL

I had an endoscopy too. I think he only did three biopsies. I asked for his notes and I only see a duodenal biopsy (mild intraepithelial lymphocytosis), gastric biopsy, and mid-esophageal biopsy. My b12 was low, my iron in the "reduced iron stores" zone, my TSH in the normal range. He didn't test for any other deficiencies. I'm also on PPI's (proton pump inhibitors for severe heartburn) which can lower b12, iron, folate and calcium.

The GI decided with a negative blood test and only mild villous atrophy that my Celiac diagnoses was indeterminate. He told me to go gluten free and come back in 4 months. If I felt better he'd say I have Celiac. The only thing is I really don't feel better yet. I just gave up dairy a couple of weeks ago and am avoiding soy too.

I have to see him next week. He keeps insisting on a colonoscopy. I had one 8 years ago that showed nothing. It was a horrible experience and I don't want to go through with it again. So what do I tell him? It's not like I can ask for more tests, I've been gluten free for 3.5 months now.

Oh yeah, I also had another autoimmune disease as a teenager, chronic ITP which ended in a splenectomy. Thanks for reading the novel.

Any help and/or advice would be greatly appreciated.

With symptoms and "mild villi flattening", plus the fact you had ITP, I would say with confidence you most likely have a gluten issue and I would lean it toward Celiac judging from having ITP. That is a very serious AI disease (which I don't need to tell YOU) and it's extremely rare, especially for a teenager. Gluten can do that, as it is not discriminatory as to which organ it attacks, after the small intestine. Sometimes you have to put a whole bunch of pieces together to complete the picture and it isn't always definitive.

The tTg test which he ran checks for intestinal damage. You had mild damage, which most likely is the start of Celiac damage. Of course, there are other problems that can flatten villi but those would not cause ITP either. Undiagnosed Celiac can and will do that. A negative blood test does not rule the disease out. Let's put it this way....if you continued to eat gluten, you would probably have enough damage down the road to trip the test but by then, your intestinal tract would be up in flames. This is what the medical profession does with Celiac...they make you wait until you are deathly sick before they find it, using their standards. It's really ridiculous what we go through sometimes. They needed to do a FULL CELIAC PANEL but didn't and now it is too late as you are gluten free.

As for a colonoscopy, it's entirely up to you. There is no law that states you have to have one and even then, I feel the same way as you do. I have never had one and unless there is an in-your-face reason for doing one, I avoid them. They always pressure people to do them because, as already stated, that test keeps hospitals in the money. Unless you have a family history of colon cancer or blood in your stool, you get to make the decision on that.

Be very patient and remain strictly gluten-free because it can take a long while to feel better and you may discover other sensitivities along the road. Healing takes time when you do it the natural way. Hope you feel better soon!

The celiac blood tests are very confusing because they can have slightly different names for the same tests. You had the tTG IgA (Tissue Transglutaminase IgA) which is the typical/most common screening test for Celiac Disease. Below is the full celiac blood panel. The entire panel gives the best information available with regard to Celiac Disease. None of the blood tests are 100% accurate for anybody with Celiac Disease - not only does the entire panel help diagnose, but it also can be used for reference in follow up appointments.

Here are some specific reasons for the various tests: the Total IgA can indicate you are deficient in IgA - if deficient your body will not produce the antibodies that are reflected in the IgA tests thus a negative result even with active Celiac Disease. The Endomysial test is important as it can indicate ongoing damage to the small intestine. The Gliadin and Deamidated Gliadin Peptide tests are important because they indicate that there are antibodies being produced in reaction to the proteins and/or peptides specific to gluten.

Not all GIs have in depth knowledge or experience with Celiac Disease - not saying yours does not, but find it interesting that only the screening test was run - especially with biopsy results indicating mild villous atrophy which caused the doctor to say Celiac-maybe. Also, one biopsy of the small intestine is not enough - again this is quite common unless the doc has experience specific to Celiac Disease.

If your primary is willing to order blood tests - I'd suggest getting more nutrients run now for comparison later on. B1, B12, D, K, Iron, Ferritin, Copper, Magnesium, Zinc. I'd also ask for the full Celiac Panel -- yes it is late, but since you never had it done it may still provide valuable data to compare in follow up appointments.

Clear as mud?

I agree with another post...give gluten-free a longer trial before deciding it is not the answer. Some of us don't improve or get worse during the first months gluten-free. Make note of any improvements -- by month three all I'd had was a slight reduction in bloating and stronger/healthier nails. I'd also wait on a colonoscopy for now.

Hang in there - make sure you have removed ALL possible sources of gluten -- even small amounts of cross contamination can impede healing and delay improvement.

My family doctor wants to defer to the GI doc. She's unwilling to say Celiac unless he does. I had my yearly physical yesterday. She's testing a bunch of vitamins, but refused to test the T3 or T4. She started giving me lessons on how TSH works. It's the first time I've ever been pissed at her.

The GI doc keeps harping about a colonoscopy because he confused himself that I had blood in my stool and thinks I might have colitis. I asked about blood because I was having really dark stools. It turns out that is a side effect of the former PPI I was on. Once I switched to Nexium it resolved. I'm probably going to ask for more time and see if I can come back in 4 to 6 months for a follow up. Hopefully I'll be feeling better by then.